I remember

I remember and I also don’t remember much from when we were first told that our son had suffered a bleed in the brain. I reflect on it often when thinking about where Thomas is now from his very first beginnings that started with the brain hemorrhage. I was home alone, in Thomas’ bedroom when I took the call. My husband was at work. I called him immediately. After I called him, I cried.

I remember being in shock. Holding back tears. Confusion. I prepared for the reality that Thomas would die, or remain in a severe comatose like state. The specialists were thrown into fairly unknown territory needing to call on Starship for advise. Thomas was only 10 days old when I was first introduced to epilepsy when seizures became as regular as every few minutes.

I learnt how to do CARES (temperature check, nappy change, wipe nose, mouth and eyes) through the incubator holes. The sounds of the many different monitors. All of which terrified me. I watched my son, motionless. Intubated because the medications slowed his breathing. Pumping milk became a regular slot in the day that led to me storing unused milk because Thomas was no longer tolerating feeds. I remember feeling a mix of hope and a sense of loss as to whether the milk would ever be needed again.

Nurses became friends. Friends kept a distance. Doctors rounds were a regular event each day, not to be missed.

I visited Google regularly in desperation for information on anything related to brain injuries, specifically a Grade iii hemorrhage. Not much, it turned out at the time.

I remember seeing quite a few babies come and go through the NICU and thinking, will we be able to leave with our son one day?

When Thomas started to move a limb and open his eyes. I remember these moments too. I felt like I was witnessing a real miracle. That the seizure medications worked and the seizures ceased.

Thomas was very drowsy for quite some time and he would need time to heal and adjust. That from now on, he was experiencing his world, post injury, for the first time. Celebrating that he could pee again. Tolerate feeds. Move out of the intensive unit. Able to regulate his temperature. Learn to breastfeed. I remember thinking how amazing it is that he would wake and cry. That he could communicate by crying. After so much silence, it was lovely to hear him cry!

Thomas came home after 7 weeks in the NICU. He was born 6 weeks early. We were told he would come home on a feeding tube. Instead, he came home fully breastfed and this continued up until 13 months old. We were told that Thomas might have cerebral palsy and this I had accepted. I was just so thankful that he was still with us.

Thomas is nearing 3 years old and gearing up for kindergarten. Thomas has come a long way since then. He has had a lot of challenges, which still continue every day. But, he is a mostly happy boy who gives and receives love. He is able to communicate in his own way the basic needs like being tired, hungry, thirsty, bored, scared, happy, angry and excited. He smiles, giggles and gives kisses. He comprehends words and follows instructions. He finds ways to move around on his back using his legs and feet. He has a cheeky personality and he loves attention. He loves music and playing.

If there is one thing that every parent/caregiver/family member/friend should know about brain injuries in babies is that every brain injury is different regardless of the grade (1-4) and it’s resulting prognosis. It takes time, a lot of time. Time to grieve, to find one’s way through acceptance and that the grieving cycle runs on repeat every time there is a new diagnosis, event or trigger. It can be very lonely at times simply because it is not a common event and when it does happen, you realize that you may or may not know anything about it or anyone who can walk/talk you through it. Again, there is no way to know how things will unfold. We were told again and again to ‘wait and see’. That was pretty much it, besides having Home Care nurses on board, a developmental therapist and to expect seizures. Having a really understanding GP helped get us fast tracked through certain scenarios. There are plenty of Facebook support groups that are private. There are a lot of blogs out there too. Just find the ones that you can relate to.

It takes courage to reach out when you so desperately want others to reach you. 💕

The choices we want to make.

Please note that I wrote this post and we ended up in hospital numerous times while Thomas was unwell. I now realise that Thomas is now due for his vaccinations…just due. Now the worry is very fresh in my mind. I am still waiting to hear back from the doctor about what I’m supposed to do. 

Vaccinations…
A hot topic. I’ve seen a lot of articles popping up about this especially with the Disneyland Measles outbreak. Every time I see an article, I see hundreds plus comments to follow. Often these comments are ongoing arguments between people, yes mostly parents, who are for and against vaccinations. It’s interesting to read the comments because of the different perspectives that arise for parents against vaccinations. And not because of choice in some situations.

If Thomas had no major health issues I wouldn’t worry so much. It would probably be a case of a grumpy baby for a day or so and its over with. I don’t know quite honestly. I also don’t believe it’s an easy process even if you have a healthy child. There’s nothing worse than seeing your child poked with a needle and tears to follow.

Thomas was 6 weeks premature but still received his first 6 week vaccination when he should have been in my tummy. It completely wiped him out too. He was so tired he couldn’t breastfeed and required nasal gastric feeds for the rest of the day. I felt thankful that he was able to be fed but sad that it wasn’t from me. I felt powerless and useless.

What followed were two more vaccinations at 3 and 5 months. With both vaccinations, Thomas was hospitalised within 2 weeks with seizures. The second hospital stay was over a week due to a rare seizure type, infantile spasms/west syndrome. His form of treatment involved over a month of intensive steroid treatment which left him immunosuppressed for 6 months. This means that he was extremely vulnerable. During this time we held what is called an open letter that means that if he had a slight fever or runny nose, we were to take him to hospital and present the letter which placed him as a high priority. During the 6 months which followed, including winter, I lived in constant fear or worry that Thomas would catch a cold and end up in hospital. We stayed home a lot. Visits were limited with friends and family. Fortunately, Thomas had one cold and terrible eczema.

It’s now been more than 6 months since the treatment and Thomas’ neurologist has advised no vaccinations for now. He’s not due for his next for a few months yet. His GP recently raised the topic during an appointment. She said she would do some research on the process for children like Thomas. This made me realise that vaccinations will never be straightforward if medical professionals are needing to put a plan in place. She mentioned two possible options such as increasing his seizure medication over a 2 week period or hospitalising him for a short duration.

I wanted to write about vaccinations so to encourage people to please not judge one another so quickly. I’m not against it but because of Thomas’ complicated association with it, it makes me appreciate that not everything is so straightforward and that some parents do not get a choice. For now, my choice is limited to following instructions given by medical professionals. 

There is a part of me, a big part, that worries about the next vaccination and what will follow. I understand the feelings of hesitation, desperation and resistance towards vaccinations. I only want the best for my child.

Downhill, fast.

Things went downhill, and fast. Since my last blog post everything was ticking along quite smoothly. Thomas was enjoying his paddling pool, was getting pretty interactive and his therapy sessions were going really well. He had been having a tough time with 4 top teeth coming through but once they had broken through, he still seemed not quite himself. He began having the odd seizure and seemed more irritable throughout the day. We made contact with his neurologist who then doubled his seizure medication. The seizures seemed to ease off but Thomas did not settle within himself.

Thomas has always had involuntary muscle contractions but they seemed more pronounced and often. His involuntary movements include his neck repeatedly twisting to the right, his jaw clamps shut and his arms and legs stiffen and he sometimes holds his breath for 1-2 seconds during these episodes. He would do this during breastfeeding and it wasn’t that he was going through a biting phase, it was involuntary. He would be latched, suckling away and then, without warning, his body would tighten and yes, his jaw would clamp shut tightly. I persisted for a while through this and every time I breastfed, I was extremely nervous and kept my finger on the ready. In the end, it got to the point where he was not getting a decent feed because he kept clamping so much which led to our first hospital stay for dehydration.

Thomas miraculously took to the bottle that night in hospital so we were discharged the next day due to this. Now I realise that he was desperate and that bottle feeding long term was a difficult, tiring act for Thomas. He only lasted less than two days getting sufficient fluid from a bottle and became irritable again refusing solids, bottle, and cup. I knew we only had one option left. I really didn’t want it and I wasn’t ready either. But we had no choice in the end.

We were then admitted again a week later. This time for dehydration and a ‘plan’ to address the lack of options for getting fluid into Thomas. The plan was to have Thomas get an NG (nasal gastric) tube put in. This was purely for fluids if he refused cup or bottle. We were still feeding him puréed solids and the yummy tasting medicines orally. In order to be discharged from hospital I was required to observe x amount of feeds and be observed for x amount of feeds as well as give x amount of feeds independently with no supervision. Turns out it is quite easy to do. Changing the plaster on his face to hold the tube in place is not easy. The fear of him pulling it out by accident  will never go away. The NG tube is a short term plan until Thomas gets a G Tube which requires surgery. This will no doubt happen within the next 6 months. 

Since this discharge Thomas seems to have got worse. He has been having the odd seizure, and loads of dystonia episodes. For the last few weeks, it has been really rough. He has been crying or screaming most of the day. Hence why I haven’t written in a loonnnnggg time. I have been putting updates on his Facebook page but it has occurred to me that I haven’t on the blog. With all the crying and screaming, Thomas stopped showing interest in his sensory room or play in general, he was waking in the night stiffening and only wanted to be held. We grew desperate waiting to hear back from the Neurologist who is a very busy lady understandably, so, we went to the GP. She was fantastic! She got on the phone straight to the neurologist with the okay to start a new medicine. It is a strong muscle relaxant, Baclofen. He has been on it for over a week now and it does seem that he is having less dystonic episodes. However, he is still crying and screaming in pain. I believe it is constipation, with his low muscle tone, he struggles to move his bowels. He will spend a whole day pushing and nothing comes out. I really feel for him. I know he is in a great deal of discomfort and pain so I am giving him Pamol and Lactulose and lots of fluids. We are seeing his Pediatrician tomorrow to hopefully look at a stronger medicine to treat the chronic constipation.

I really hope that we are able to find out what it is for sure that is causing Thomas so much pain (even though I think I know, it is not confirmed!). I just want my boy to be comfortable and happy again.